Tag Archives: Disability

Should You Avoid the Word “Inspiring” When It Comes to Disability?

6 Aug

lying body(Image by Crodriguesc used under CC 2.0 via)

 

Many of the [deaf, dwarf, autistic, schizophrenic, disabled, transgender & gifted] people I interviewed said that they would never exchange their experiences for any other life – sound thinking, given that exchange is unavailable.

– Andrew Solomon in Far from the Tree

 

Clichés are ideas, images, and sayings that are overused. They start off as messages that easily convey meaning. Such ease may at first be a sign of their success. But when they are repeated too often, they foster laziness. They hamper inquiry and innovation. We see a happy picture of a mother and child, we recognize it and all the uncomplicated feelings it is intended to convey, and we move on. Clichés hinder change and therein progress.

The opposite of a cliché has the opposite effect. It makes us pause, look again, consider the world and our assumptions about it, and—in the best case scenario—prompts a shift in us and our habits.

The term “inspiring” is cliché in the realm of disability, which is why it is on its way to becoming a taboo, if it hasn’t already. A boy who walks with crutches while flashing a smile is inspiring. The sheer willingness to face each day with lupus is inspiring. A runner with prosthetic legs is inspiring. Inspiration porn refers to such images in posters, human interest pieces, and memes, and their use as a reminder to a non-disabled person of how good they have it. This reminder is ever-so brief in comparison to the life situation that triggered it.

Inspiration porn is unrealistic but it has its roots in truth. Well-being is often achieved through a sense of gratitude and gratitude comes from having perspective. But the overuse of inspiration porn is problematic because it is one-sided. We are shown the simplicity of happiness but never the complexity of bioethics, the politics of disability rights, or the repetitiveness of chronic pain. The predominance of grinning patients is worrisome to disabled people because we could conclude from it that the world is only interested in us insofar as we are willing to repress anything contrary to the sunny narrative. This implies that the world is our ultimate fair-weather friend.

Inspiration porn can enable emotional vampirism. In the name of being “inspired,” we are often invited to watch someone with a disease or disability on reality TV, shed a few tears, congratulate ourselves for our willingness to dabble in sadness, and quickly move on to life as it was, perhaps lecturing others on just how hard others have it, while never considering our indirect role in any hardship. How many people say they have been “inspired” by Little People, Big World but then do nothing to change the U.S. policy on the U.N. Convention on Rights of Persons with Disabilities? I’m gonna say lots. Those addicted to emotional vampirism empathize in all the wrong ways, frequently muddling the truly tragic and the merely different.

But “inspiration” need not be unproductive. Watching and reading about disability, illness, and loss can ground us to humanity. After all, what else can – besides knowing someone personally? Such connections can lead us to genuinely understand the frivolity of our daily worries about job promotions, physical fitness, and that thing a supposed friend muttered to us that may have been a back-handed insult or may have been nothing at all. Having perspective is rarely a bad thing. There’s no harm in feeling gratitude—not pride, but gratitude—for every day that we do not have to endure intense physical pain or face probable death.

We can draw both good and bad conclusions from seeing someone doing something we didn’t know was possible. I am concerned when exceptionally talented disabled athletes are promoted as proof of why no one should ever take a break or not take risks. But I was suddenly overjoyed the first time I was treated by a doctor with a visible disability. (Seriously, I almost hugged him.) Representation feels good. Seeing is believing, to use a cliché.

History has proven that innovation and bravery are often contagious, as are idleness and cowardice. We’re social animals. Progress relies on our recognizing the world’s hurdles that need to be removed regardless of whether or not we have a personal connection to those they hold back.

But “inspiring” is overused. Maybe “humbling” is a better term. In this day and age, humility is so rare we may as well consider it radical. And how about “provoking”? When we see someone face struggles we can only imagine, we could ask ourselves if it provokes anything in us. And go from there. 

 

 

When A Hero Comes to School

30 Jul

IMG_7178(Image by Gordon Tarpley used under CC 2.0 via)

 

Leaving you this weekend with a short video of British actor Warwick Davis’s visit to a Nottingham primary school to explain dwarfism on behalf of Jasmine Chapman, a pupil with dwarfism who had asked Davis to come.

Davis has starred in a variety of block-buster fantasy films alongside the likes of Daniel Radcliffe, Val Kilmer, Diane Wiest, and Carrie Fisher. While his average-sized co-stars have had careers expanding far beyond the fantasy genre, Davis has not. This is frustrating.  As I’ve written before, it’s a problem that almost no disabled actors are famous, and the tradition of dwarfs in fantasy is complicated. Davis’s role in Ricky Gervais’s one-season-long series Life’s Too Short was even more so.

But most primary school children are unaware of all that. And sometimes that’s a good thing. I had a crush on Davis as a child after first seeing him in Willow in 1988. He had a lovely speaking voice replete with British accent and long curly hairy and he ended up the hero. I bought it. I was blissfully ignorant of the clash between adults telling me I could be anything I wanted to be and the reality of the job market for people with dwarfism at the time. Children need heroes.

I watch the video of nine-year-old Chapman sitting next to Davis as he explains that he and she are only different by virtue of their size and otherwise just like everyone else – sidestepping the intricate issues like chronic pain, necessary surgeries, disability funding, bioethics, political correctness, beauty standards, street harassment, and job discrimination. I watch the way he holds the kids’ attention by reiterating his lines as Professor Flitwick in the Harry Potter films. I watch it and I know that at Chapman’s age, I would have simply loved every minute of it.

 

 

How Far Can Our Imagination Go?

16 Apr

 

Years ago on The Daily Show, comedian Lewis Black offered a weak defense of using the R-word. In his tirade, Black yuk-yukked about the idea of a show starring developmentally disabled people. His joke was hilarious if you find the sheer idea of such a show hilarious.

Well, this week the German disability advocacy organization Aktion Mensch has published a video that asks, “What if disabled people got to be the stars in Hollywood movies?” As examined before on the blog, it is a genuine problem that almost no famous actors are disabled and almost no disabled actors are famous. So with that I leave you all the video above and best wishes for this holiday weekend.

 

 

Tax Day!

9 Apr

HELLO! HUMAN RIGHTS (Image by Andres Musta used under CC 2.0 via)

 

As Tax Day approaches in the United States and here in Germany, everyone will have an opinion as to which entities deserve public funding, and which are impractical, immoral, or evil. It is perhaps easier for me to remember that taxes not only support disabled people. Through health care, medical research, social work, education, and the justice system, they keep many alive. And they also help lessen the everyday physical pain experienced by some of us.

Even banal subsidies can make a substantial difference. As a German resident classified with a “Grade 50” disability, my ticket for all public transportation in the Berlin metropolitan area is subsidized so that I pay a fraction of the normal fee. This discount offsets the extra costs I regularly incur by needing to use taxis or a car rental for distances most other 35-year-olds would either walk or bike. By relieving me of this financial burden, I can have as much money saved as a pedestrian does to spend on food, clothes, rent, movies, music, houseplants, hair curlers, napkin rings, bubble gum, sealing wax, bath toys, or presents for my loved ones. Alternatively, it saves me the extra time I would have to spend walking and then recovering from the pain of walking – time which I can use to be more productive, which helps me qualify as a taxpayer capable of paying it forward to others in need of subsidies.

I have been called a freeloader. A disabled friend was told she should realize “what we have to do for you” – “we” being the non-disabled taxpayers. Many political theorists argue that the extra costs faced by disabled citizens should only be offset by privately run charities funded by donations from those who actively choose to be so morally upright. Others go so far as to advocate Social Darwinism, which would be a death sentence for many disabled people.

The intricate relationship between government and tax structures have occupied economists, political scientists, academics, philosophers, monarchs, and politicians since the legend of Robin Hood, and I have no intention of tackling it in its entirety here. But amidst the myriad points and counterpoints, one truth remains clear to me: A society that agrees to ease some of the burdens disproportionately placed upon disabled people is agreeing to ensure the existence of disabled people. And by doing so as the general public in a mandate to itself—instead of leaving it to the “good will” of a few individuals—this society tells disabled people they should be no more grateful to be alive than anyone else should. That message is crucial. While we all have varying abilities that shift in value throughout time and space, equality means that no one is altogether more important than anyone else. We must believe this if we want to claim to believe in human rights.

 

 

Rare Conditions & the Tyranny of the Majority

5 Mar

Odd One Out(Image by Javier R. Lineira used under CC 2.0 via)

 

Last Tuesday, February 28th, was Rare Diseases Day. (In leap years, the day is held on February 29th.) The organization’s website reports: “A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2,000. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.” For the purposes of this article, I will supplant the word “diseases” with “conditions” since “disease” is a complex word already examined earlier on this blog.

Rare conditions are frequently misdiagnosed and poorly understood due to a lack of funding for research. All forms of dwarfism qualify as rare, since the most common form, achondroplasia, occurs somewhere between 1 in 20,000 and 1 in 40,000 births. Vosoritide, the drug developers hope may “cure” achondroplasia, is classified as an “orphan drug.” Such drugs are so named because of their difficulty in garnering support for research and development. The Orphan Drug Act of 1983 is intended to counteract this disparity, but vosoritide owes its existence to one father of a child with achondroplasia who had the financial means to launch the project.

However, I don’t think any of these facts were what motivated me as a child to ask my mother, “There are more dwarf people than tall people, aren’t there?” I knew the answer before my mother soberly shook her head. I remember that even at the time I knew I was issuing a hope rather than an honest question. I wanted there to be more of us. Because… Because even a four-year-old knows there is strength in numbers.

Numbers help build community and communities build solidarity. The women’s movement of the 70s, 80s, and 90s often touted the fact that we made up 51% of the world population. (This is no longer true.) Lists of adopted, dyslexic, Jewish, left-handed, colorblind, or genderfluid celebrities are but a Google search away for anyone seeking to celebrate diversity. Activists in the early days of the gay rights movement frequently argued that homosexuality was far more common than assumed. But arguing for a group’s rights on the basis of its ubiquity seems to contradict the foundation of minority rights. So why do we so often do it?

Minority rights advocates know that challengers of a certain group’s fair treatment will often try to portray low numbers as proof of anomaly and anomaly as deserving of a low degree of care. When singer Jason Webley tried—and failed—to defend his Evelyn Evelyn performance, for which he and Amanda Palmer dressed up as conjoined twins raised in the circus, he argued that the number of people who could be hurt by the project was small: “I had some fear that the few conjoined twins living in the world might find the project offensive.” (Emphasis mine.) One commenter sarcastically responded that Webley and Palmer should feel “lucky” that there were so few conjoined twins for them to offend thanks to the fact that the infant mortality rate of the condition is remarkably high.

A man from the U.S. recently complained to me that “LBG-whatever people are like .000001% of the population, but we gotta hear about their rights 24 hours a day!” In 1948, Alfred Kinsey shocked the public when he deduced from his interviews that roughly 10% of the U.S. male population was exclusively gay. The current estimates of openly gay and lesbian citizens are lower than this, but of course the effects of the closet combined with the complexities of self-identification and labels remain a wrench in the work of statistics. But even if studies someday decisively prove Kinsey was overestimating the percentage, they will not disprove the fact that gay people exist in every possible culture and sub-culture. Numbers will rise as shame and secrecy recede, which in turn will cause prejudice to recede. Studies have repeatedly proven that people are less likely to be homophobic if they personally know one or more people who are openly gay. Many more lives would have been saved had there been less homophobia and more funding for research in the first days of the AIDS crisis.

Acceptance is often aided by awareness and awareness is aided by prevalence. This is a frustrating fact for minorities who will always be low in number. Women and ethnic groups may dominate a given country at a given time, but people with intersex conditions or dwarfism will never do so. But while this may be a cause for loneliness—who doesn’t like knowing someone with similar experiences?—it should not be cause for existential threat. The guarantee of liberty and justice for all is founded on the very opposite of this. When liberal democracies commit to equality for all citizens, they commit to protect the few from the tyranny of the majority. In her essay, “What to Expect When You Have the Child You Weren’t Expecting,” philosopher Alice Dreger writes, “Your child’s civil rights and status as a human being should not depend on the prevalence of her condition.” (Emphasis hers. And mine.)

Whether you are a woman with the rarest form of dwarfism or a man with breast cancer or the carrier of a condition not yet named or a wheelchair user facing a staircase, your treatment should never be contingent upon how many others there are out there like you. Equality means rare and common conditions both deserve common courtesy. Whether a condition should be cured, treated or accepted by society should be determined by whether or not it inherently causes suffering. The quicker we learn to wrap our heads around that, the less suffering there will be.

 

 

From the Frontlines of the Women’s March in Berlin

22 Jan

berlin-00

 

German newspapers currently estimate 2.5 million people worldwide—on every continent, including Antarctica—took part in yesterday’s Women’s March.

Earlier this week there was a debate about the mention of disability in the official platform of the March on Washington. Disability advocate Emily Ladau wrote:

My heart sank when I read it.

The first time the word “disabilities” is mentioned, it shows zero recognition of disability as a social justice issue:

We recognize that women of color carry the heaviest burden in the global and domestic economic landscape, particularly in the care economy. We further affirm that all care work — caring for the elderly, caring for the chronically ill, caring for children and supporting independence for people with disabilities — is work, and that the burden of care falls disproportionately on the shoulders of women, particularly women of color. We stand for the rights, dignity, and fair treatment of all unpaid and paid caregivers. We must repair and replace the systemic disparities that permeate caregiving at every level of society.

I also recognize that women of color disproportionately take on the caregiving as a job, that caregiving can be extremely demanding work, and that fair compensation is imperative. But you know what it says to me that this bullet point is one of only two places where disability is mentioned in the entire platform released by the Women’s March? It says that my existence as a disabled woman is a “burden.” My existence as a disabled woman is “work” for someone else. My existence as a disabled woman does not matter.

Disability is mentioned only one more time in the entire platform… And considering that, according to the U.S. Census Bureau, 1 in 5 Americans have disabilities, disability rights deserve more than a cursory mention in the official Women’s March platform.

This touches on two problems: the vast swaths of feminism that ignore the discrimination burdening disabled women, and our macho culture’s fear of men taking on caregiving roles or any jobs done primarily by women. While feminists continue to fight for mandated paid maternity leave, mandated paid paternity leave is widely considered a bridge too far in the United States. Only 12% of American men offered it by their employers take it. Some economists have tried to explain away the election of Donald Trump by talking about the emasculated feelings of male workers facing a paucity of management opportunities in the American Rust Belt and that the only way to appeal to them is to give them jobs that make them the primary breadwinners in their homes once again.

While fair wages and economic inequality should be a paramount concern of any human rights movement, the insistence that men must be the primary breadwinners and will never be satisfied turning to “pink jobs” like caregiving is not highlighting an indisputable truth about all men – it is highlighting a problem in white male American culture.

Those who say the male ego simply cannot budge on the issue need only look to American black men, who pursue caregiving jobs at a rate 3 times higher than white American men do. Or look over here to Germany, where 1 in 5 students in caregiving programs are male. (Eighty percent of German men also took some form of paid parental leave—which is mandated by the government—in 2013.) Or look to the the Dulais Valley coal miners whose true, history-making story was the inspiration for in the 2014 film Pride. In that film, the problem of emasculation is recognized when one of the strike leaders argues against accepting donations from a gay and lesbian group: “Think of the men! It’s bad enough that their wives are financially supporting them, but now they’re relying on a bunch of gays and lesbians?!” Spoiler alert: By the end, the men they’re talking about open their minds. Or demonstrate that they were never concerned about it to begin with.

The Women’s March stated loud and clear that it’s on all of us to open minds about gender roles until our entire culture changes. We feed the denigration of women—not to mention all other forms of xenophobia—when we agree that white men should feel denigrated to do anything traditionally done by women. We need women who would be embarrassed to date a man in a traditionally feminine job to abandon such thoughts. We need men who are tempted to belittle a guy for going to nursing school to prove he is braver than that, until the man who does snicker is the one feeling out of place. And everyone needs to agree that caregiving is freakin’ hard and deserves to be compensated accordingly.

Yesterday’s Women’s March was a resounding success. Despite Ladau’s valid complaints—as well as earlier reports of friction among some white, middle-class feminists and feminists belonging to other minority groups—the day ended up awash in calls for combating injustice faced on the basis of disability, gender, race, sexuality, class, nationality, ethnicity/religion, immigration status, and appearance. In Washington, Gloria Steinem demanded a moment of silence for those who could not be at the March because they had to work in underpaid jobs. Tammy Duckworth got up out of her wheelchair and onto her crutches to demand unwavering defense of the Constitution and the Americans with Disabilities Act. Angela Davis seemed determined in her speech to mention every single marginalized group in the United States and overseas. And when the crowd in Berlin began chanting, “Black lives matter!”, one black woman at the center began singing for joy with tears in her eyes.

There were many signs and songs that not every protestor immediately embraced. One marcher who identifies as queer told me he disliked the portrayals of Donald Trump in drag because being trans or feminine should never be a source of shame. Plenty of marchers of all political stripes expressed unease with blatantly owning the sexualized slurs so many women are the target of. Those of us who are fans of cyborg feminism cringed at gender essentialist references to “Mother Earth” or “natural” womanhood. Others winced at all the swear words. But democracy is hard work. And it was a victory for democracy that millions were willing to march together and engage in an international conversation that sometimes made them uncomfortable. A willingness to leave one’s comfort zone is the first step toward fully embracing and protecting universal human rights.

 

 

Disability & the Politics of Shoe-Shopping

16 Oct

Fashion(Image by Thomas Hawk used under CC 2.0 via)

 

“I like them,” I said, eyeing the smart and slinky black sneakers in my hand, “but my orthotic inserts don’t find inside.”

The saleswoman shook her head sympathetically. “These doctors just don’t understand. They make it so difficult for women looking for shoes.”

Um, I don’t think that’s who’s making it difficult, I said to myself. Because she isn’t the one flooding the market with shoes that discriminate against disabled bodies, it didn’t feel necessary that this one saleswoman be confronted with the issue. But we as a society probably should.

If I don’t wear my orthotics, I burden my achondroplastic back in very unhealthy ways. The same goes if I wear heels regularly, instead of only occasionally, as my orthopedist advises. When I was younger I would often flout the rules, but my tolerance for pain-inducing shoes has lessened since I turned 30 and needed back surgery to avoid paralysis, as one-third of all people with achondroplastic dwarfism do. A friend who has undergone a few operations on her spine absolutely cannot wear heels. Yet wearing orthotics every day is not seen as being healthy and responsible in the same way that, say, running a marathon is.

Will chronic pain management never be seen as bad-ass because it lacks the thrill of breaking records or leaving others in the dust? Or is it because it defies the “no pain, no gain” rule? In which case, foregoing orthotics and swallowing the pain would seem to be the bad-ass choice.

“Oh, I rarely ever wear my orthotics!” two non-disabled women told me years ago.

Eat something sugary or fattening and you can easily attract disapproving looks or even commentary. (“Do you know how many calories/toxins are in that?!”) But risk back pain in a pair of stilettos that make you teeter like a giraffe and you’re suffering for beauty like any self-respecting woman would.

Why? Is it because, as Jessica Valenti wrote last year, too few woman are willing to endure “the social consequences of aesthetic apathy”? Does bodily beauty always require some degree of discomfort? Even the love-your-body yoga crowd pushes the back-to-the-earth barefoot aesthetic, which can be supremely painful for many disabled people.

Fashion is fickle and ever-changing. In a world where humans can find beauty in everything from body-builder biceps to heroin chic, and switch from viewing heels as manly to sexy, it seems possible for us to stop marginalizing and perhaps even some day tout medically responsible choices as fashionable choices. Why haven’t we managed this yet? What will it take to get us there?

 

 

On Catcalls, Body Types & Lasting Love

25 Sep

My latest article, “Disabling the Male Gaze: ‘Longing’ to Be Objectified Won’t Shatter Narrow Beauty Standards” is featured this weekend at Salon. It’s a rebuttal to a recent piece in The New York Times ongoing series on Disability.

 

 

When We Ignore Clinical Trials, We Ignore the People They Protect

11 Sep

Mime/Sleep(Image by Del May used under CC 2.0 via)

 
Back pain is one of the most common causes of sick leave in many Western countries. It is also one of the most common symptoms of achondroplastic dwarfism. The severe curvature of the spine coupled with innate hypotonia (i.e., low muscle tone) results in chronic pain from birth on, at times requiring back-braces and/or surgery to avoid debilitating complications.

I recall being younger than five-years-old, sitting cross-legged on the floor with a book and knowing I couldn’t stay like that for more than a minute or so before the aches would begin. I would usually end up slinking toward the sofa. In primary school I was exempted from sitting on the floor, given a chair with which to tower over my classmates during story-time. Years of physical therapy and orthopedic consultations have done little to alter this reality because the curvature is anatomic. Exercises and ergonomic furniture make the difference between utterly unbearable pain and merely lingering pain. At the end of a three-week stay in Tokyo, I wrote to my partner, “I will miss so many things about this city. Things I will be happy to come home to: couches, chairs with backs, toilets with seats, back support in general.”

A fascinating interview with architect Witold Rybczynski appearing last month in The Atlantic chronicled the history of the chair and the differences between cultures in which people primarily sit on chairs and those in which people, like the Japanese, primarily sit on the floor. The reason for the dichotomy continues to elude researchers:

You’d think, for example, that people in cold, wet climates would be more likely to sit on chairs, so as to avoid the unpleasant ground. But the Japanese, who endure frigid winters, have traditionally sat on floor mats, while the ancient Egyptians, who lived in a warm, dry climate, are thought to have invented the folding stool. Nor is chair-sitting necessarily a matter of lifestyle; some nomadic groups move about with collapsible furniture, while others don’t. Nor is it always a product of economic or technological advancement; the prosperous Japanese were long aware that people in other parts of the world sat on chairs—they just chose not to. Some societies, like China, have transitioned from being predominantly floor-sitting cultures to being predominantly chair-sitting cultures. Others, like India, idiosyncratically mix the two approaches.

California-based acupuncturist Esther Gokhale believes that members of most floor-sitting cultures do not suffer as much back pain as those of us in chair-sitting cultures. National Public Radio’s Goats and Soda program interviewed Gokhale in June about a series of exercises she developed—the Gokhale Method—intended to reshape the Western human spine and rid sufferers of back pain. Doctors in the San Francisco Bay area have been referring patients to Gokhale, and several celebrities have followed suit, despite that her method has not yet been clinically tested. Dr. Neeta Jain demands, “If people are finding things that are helpful, and it’s not causing any harm, then why do we have to wait for a trial?

We should wait for many clinical trials because they would prove decisively whether or not the method is causing any invisible harm, and it would control for preexisting conditions like achondroplasia, cerebral palsy or lupus. While there is no proof that Gokhale’s method cannot lessen back pain for people with achondroplasia, there is also no proof that her one-size-fits-all approach cannot cause more pain or injury to people with achondroplasia as many exercises developed for average bodies can.

As a doctor, Jain is in a position of authority and she is acting irresponsibly when she fails to acknowledge the possibility of unforeseen risks. Perhaps she only refers her patients to Gokhale after screening them for potentially complicating factors, but her statement excludes such caution and instead serves as an advertising slogan.

Perhaps the greatest achievements of modern medicine has been its ability to serve not only the general population but those with rare and exceptionally complex conditions. Yet advice found in the health sections of any mainstream news source tends to overlook those of us with rare conditions and official disabilities. This is a truly ironic form of marginalization, since our lives have undoubtedly been far more affected by issues of health and medicine than the average reader. Going so far as to call it ableism seems extreme, since space is limited from a journalist’s point of view. But it is unfortunate that the best health advice for most people with disabilities is to ignore the mainstream health sources that ignore them.

 

 

Should Jokes About Minorities Be Off Limits?

7 Feb

 
Ofcom, the communications regulator of the United Kingdom, has concluded that comedian Jimmy Carr was in breach of the code of conduct when he cracked the following joke on The One Show last November: “I tried to write the shortest joke possible, so I wrote a two-word joke which was ‘dwarf shortage.’ ” He then looked squarely into the camera and said, “And if you’re a dwarf and you’re offended by that, grow up.”

The scandal at face-value seems odd. Carr’s joke is fantastically boring to those of us with dwarfism. (A joke is indisputably boring if it’s easy to prove that anyone who might attract such a comment and who has graduated primary school has heard it a kajillion times before.) But not only is it far from the most distasteful thing Carr has ever said—his cracks about pedophilia come to mind—but it is far from the cruelest dwarf joke he’s ever made.

In 2009, in an episode of the BBC quiz comedy show QI, host Stephen Fry rattled off a list of 19th-century circus freaks on Coney Island. Trying to suppress a giggle, he said, “There was Bonita—I don’t know why this is funny—the Irish fat midget.”  

The audience exploded with laughter.

Carr immediately looked at Fry agape. “You don’t know why that’s funny?”

I share a love for QI with my partner so fierce that we had once joked about using the theme song for our wedding procession. I also am not skinny,  belong to a family named Sullivan, and have achondroplastic dwarfism, so it’s hard for me to imagine any sort of joke that I could take more personally without it being addressed to me specifically. What better way to be reminded that so many adults would secretly side with the playground bullies if they could than seeing the audience and creators of your favorite show crack up over your very existence?

QI was never reprimanded for it by Ofcom, however, because it is on much later in the evening in the U.K. than The One Show and does not require its guests to sign a form agreeing to comply with family-friendly standards of comportment. Ofcom reports that the BBC responded to its complaint about Carr on The One Show thusly:

The BBC said that “any humour alluding to disability has the potential to offend and, although the BBC received very few complaints on the issue, the One Show’s Editor… sincerely regrets any offence that has been caused by it”. The BBC recognised the “need for sensitivity and careful consideration in respect of the inclusion of material of this nature”. It added that “The One Show is heavily involved with the Rickshaw Challenge initiative that raises money for Children in Need, and in that capacity has worked closely with young people with disabilities including achondroplastic dwarfism. The production team is very well aware of, and sympathetic to, the sensitivities of those affected by disability to humour that alludes to it.”

The problem with imposing standards for offensiveness in humor is that we have all had our jaws drop in disgust, and we have all urged a disgusted person to lighten up. This is why the most current theory about humor is founded on the concept of benign violation. A joke makes you laugh when it strikes the perfect balance between fun and shock. It fails when it comes off as too soft or too harsh.

QI was reprimanded in 2011 for quips about a Japanese man who survived both the Hiroshima and Nagasaki atomic bombings. The show had until then featured many jokes about World War II, but none involving the crimes against humanity, or any specific victim of the war.

In 2013, the satire magazine The Onion for the first time in its history fired a staff member and issued a public apology for referring to 9-year-old Quvenzhené Wallis as “a c**t.” Critics pointed out that sex jokes can be funny, jokes about kids being annoying can be funny, but sex jokes about a specific child referred to by name are indefensible.  

Similarly, Ofcom argues that Carr’s second line (“And if you’re offended by that, grow up!”) is what placed him in breach of the code of conduct. They found unacceptable his “apparent suggestion that those with dwarfism would not be justified if they felt personally offended by his attempt to derive humour from their condition.”

It seems easy to argue why I hope for a day when non-dwarfs no longer double over at the mere mention of my existence, just as they no longer double over at the mere mention of other minorities. Yet it is enormously difficult to argue what to do to ensure that day will come. I began this blog by documenting all the different sorts of media—both the high-brow and the dreadful—that took cheap shots at dwarfs. In the four years since, I’ve never been at a loss for material.

For now I feel we should keep the rules simple. I propose a telecommunications ban on jokes about people with dwarfism except by people with dwarfism. If the public so desperately needs puns about height and size, then give Peter Dinklage and Warwick Davis and Leonard Sawisch and Meredith Eaton more screen time. And if Jimmy Carr thinks that’s unfair, he should grow up.

I know about a limb-lengthening procedure that could help him out.

 

 

Everyone’s Sexuality. Everyone’s.

31 Jan

(Via)

From the Archives

Don’t read the comments. Don’t read the comments. Don’t read the comments.

That’s what raced through my mind as I read “The Challenges of Having Sex As A Little Person” at The Atlantic. Of course I read the comments anyway.

And I was only slightly startled to find nothing but solipsistic snickering and overdone puns. The Atlantic doesn’t win any points for ending the article on a pun, either. But praise is due for addressing the topic at all. Based on an extensive interview with Dr. Marylou Naccarato, who has Kniest dysplasia, the article takes a wonderfully sex-positive approach to the experiences of people with dwarfism and the physical obstacles they can face in bed.

As per nearly every feature on dwarfism in the mainstream media, there are some factual errors. For example, one dwarf couple is quoted claiming that people with achondroplasia require “no medication, surgeries, special needs, nothing.” (See here for a list of the many complications we are at risk for.) But Naccarato is doing great work that is revolutionary in light of the fact that Little People of America, and probably most disability advocate organizations, repeatedly shy away from the topic of sexuality.

A simple reason for their silence is that almost all disability organizations comprise just as many parents and relatives of disabled people as disabled people themselves. And who wants to debate the best way to masturbate with Mom or Dad sitting next you? A more sinister reason for the silence is one of the building blocks of modern prejudice against disabled people: that is, the presumption that they are innocent, and therefore asexual. Most positive portrayals of disabled people are cute and cuddly. Is it the only way society can accept us? Refusing to see a minority as anything but asexual is to deny them their full humanity, on par with slut-shaming, prude-shaming, queer bullying, and objectification.

Before I go any further, let me say this: I do not want to talk publicly about what I do in the bedroom and I do not want to know what you do in the bedroom. My firm belief in sex-positive feminism and equality does not mean I think that you are sexy or exciting or impressive. Unless we’re close confidantes or I’ve indicated otherwise, please assume I don’t want any mental images of you and your naughty bits, no matter what they look like.

That said, I fully support anyone’s right to desire any sort of consensual sex imaginable. Without double-standards. Without the pressure of competition. Without the nuisance of others turning their personal preferences into rigid rules.

Take, for example, the way virginity is so frequently turned into not just a game but a high-stakes tournament. When and how did you lose it is an idea all of us are expected to base much of our identity on, even as adults. This is despite the fact that, according to medicine, virginity doesn’t exist. After all, what kind of sex does a guy have to engage in to officially “lose” it? And what about girls born without hymens? When exactly do lesbians lose their virginity?

Like race, virginity is a social construct and, in the words of a very wise person on Tumblr, what can be socially constructed can be socially changed. Last year the great Tracy Clark-Flory interviewed acquaintances about the sexual experience they considered to be their “first time.” The glorious thing about her inclusive project was that it revealed human sexuality to be just as diverse as everything else about us. Some defined their first time by their first orgasm, others by a particular first touch or experience of being touched. The problem with her stretching the definition of “losing your virginity” so broadly is that it robs competitive, insecure people of their ability to set standards with which they can gloat and put others down. Wait, no. That’s another glorious thing about it. There really is no problem with recognizing everyone’s experience as equally valid.

Failing to include everyone not only causes unnecessary humiliation, but it causes us to miss out on opportunities for true enlightenment. To quote the authors of You Can Tell Just By Looking: “Sexual minorities—people whose sexual desires, identities, and practices differ from the norm—do a better job talking about sex, precisely because they are constantly asked to explain and justify their love and their lust to a wider culture and, even, to themselves.” The more you examine harmful traditions, the less necessary they become.

This does not mean that minorities have better sex. Indeed, too many activists in the sexual revolution end up repulsing readers and listeners when they allow pride in their sexuality to devolve into arrogance, insisting their sex life is better than yours, rather than merely different. For a year, the BDSM club at my alma mater ran the slogan: “I do what you’re scared to fantasize about.” Not helpful. And kinda pathetic the more you think about it.

I will never judge someone for liking any particular kind of consensual sex, but I will judge anyone who tries to turn sex into a competition to calm their own self-doubts. Whether you’re a wise-cracking online commenter or a sex-positive pioneer, true sexual liberation is about moving beyond the middle school clique mentality, not indulging in it. It’s pretty much the least attractive thing there is.

Sometimes Beauty Is Easily Recognizable

24 Jan

Fashion Shoes...(Image by Thomas Leuthard used under CC 2.0 via)

 

Sometimes beauty is easily recognizable. Sometimes it’s not. Sometimes fashion is a statement. Sometimes it’s not. Sometimes street photography is a burden for those whose bodies are more likely to be photographed than others’.

Feel free to share your ideas about this, in or outside of the context of the above photograph by Thomas Leuthard.

 

 

 

 

Can We Understand What It Is Like To Hear Sound for the First Time?

17 Jan

listen(Image by Jay Morrison used under CC license via)
 
In the 1990s, Cristina Hartmann was one of the first of a few hundred deaf and hearing impaired children in the United States to undergo surgery for a cochlear implant. She has written extensively about the experience of hearing sound for the first time after the implant in her right ear was activated, most recently this month on Quora.com:

My mother was the one who told me, “Raise your hand when you hear something.” That statement left me baffled. What was I looking for? It was a bit like searching for Waldo when you didn’t know what he looked like.

In that tiny, windowless room deep in the large Manhattan hospital, the audiologist began tapping away at her keyboard. Everyone stared at me, even a woman standing in the doorway whom I had never seen before. I felt the heavy weight of expectations on my shoulders. I had to do something. I concentrated very hard, searching for the mysterious, indefinite Waldo. Whenever I felt anything, an itch or a breeze, I raised my hand slowly, searching everyone’s expressions for whether I had gotten it right or wrong. Nobody gave me any confirmation, so I went on guessing. Twenty-five years later, I realize the whole thing was a show that I performed. I knew this was a momentous event, and I didn’t want to disappoint….

As a congenitally deaf child (who was a bit long in the tooth at 6), I had never formed the neural pathways for my brain to even begin processing auditory stimulation. In the fashion of the ostrich, my brain ignored the strange stuff, and I remained as deaf as I had been an hour prior…

It took months and plenty of therapy for her brain to adapt. Thirteen years later, the activation of a second implant, this time in her left ear, proved a more harrowing experience than the first:

As the audiologist began the beep sequence, I burst into tears and involuntarily clenched the left side of my face. She looked up, puzzled. “Why are you crying? You’ve had this before!” she said. The pain was like sparklers going off on the left side of my head. The stimulation, as little as it was, completely overwhelmed me.

Even though I had already laid the neural pathways for auditory stimuli for my right ear, my brain was unprepared for the stimuli coming from the left side. Since my brain had already experienced this type of stimuli, it could process it, but it was still sensory overload. That stuff hurts. It took me months to acclimate myself to the new implant, but in the meantime, I cringed every time I turned it on. As I said, laying new neural pathways takes work.

Hartmann was later told by the mother of another patient, “Once they started with the beeps, [my daughter] screamed and cried.”

Such narratives exist in stark contrast to the YouTube videos of newly activated implant users laughing and smiling—and, in one case, crying for joy—that have been bouncing around the Internet with far greater frequency. While both narratives provide important information for those considering cochlear implants for themselves or their children, they are also an important contribution for the greater public in our understanding of what it means to be deaf.

It makes sense that crossing out of the world of silence into the world of sound is just as disorienting as its opposite. A hearing person with a middle ear infection strains to perceive the sound of speech, and a deaf person with a new cochlear implant strains to tune out noise pollution: the knocks of a radiator in another room, car doors slamming on the street, wind, footsteps, not to mention the countless background beeps and clicks of the Digital Age. After all, when a baby leaves the womb, she does not instantly adapt to her new home. She comes out crying. There’s too much light and not enough warmth. And, if she is not deaf, there is too much sound.

Speech is no less difficult to learn than Sign language, just as English is no less difficult than Chinese. The ease with which we learn one form of communication or the other depends entirely upon our personal experience and place in the world. For those of us who have grown up hearing speech, the viral videos communicate something very different than for those who grew up in Deaf culture.

While the experiences of utter delight portrayed in the videos are valid, their popularity contributes to an oversimplification of the issue. Watching a toddler smile upon finally hearing his mother’s voice for the first time sends a very strong subliminal message: Being deaf must be worse than not being deaf, and therefore anyone would want to join the world of the hearing. But the general public as an audience is already biased toward the hearing world’s standards of happiness. We are moved by the sound of loved ones uttering our names but not at the image of them signing our names because our culture does not rely on—and therefore does not highly value—Sign language.

This what inspired Lalit Marcus, the daughter of deaf parents and an active promoter of Deaf culture, to pen an article for The Wire titled, “Why You Shouldn’t Share Those Emotional ‘Deaf Person Hears for the First Time’ Videos”:

I want to make it clear that I don’t have a problem with people who choose to get cochlear implants. Medical decisions are painfully personal… I’m all for people making the health choices they think are best for them. What bothers me are the maudlin videos produced out of someone’s intense, private moment that are then taken out of context and broadcast around the world. What bothers me is how the viewer never learns how the individual came to the decision about their implant, which factors they took into account, whether their medical insurance covered it. Sometimes we don’t even learn their names.

This gives me pause. I consider the clip of me removing my casts to look at my newly lengthened legs, which featured 15 years ago in the HBO documentary Dwarfs: Not A Fairy Tale and last year on Berlin’s public station. The moment was simply joyous—as was the moment I stood up, let go of my friend’s hands and took my first steps—but the story behind it was abundantly complex. Which hopefully both documentaries portray.

I have endeavored to communicate that through this blog and all the media work I have done for the past 20 years.

Limb-lengthening and cochlear implant procedures are markedly different in several ways. Limb-lengthening, for example, does not threaten to endanger another language. But it does threaten to break ranks in the dwarf community through the controversy of altering versus accepting extraordinary bodies. Both procedures have proven to evoke vitriol among their proponents and detractors.

Hartmann reveals:

Most of my deaf friends were good about my CI. They didn’t mind it, except for the fact that my speech therapy cut into play time. That being said, people in the Deaf community felt free to make pointed and derisive comments about my CI. I still get these comments, even almost 24 years after my surgery. To some, I’ll always be a CI-wearer and a turncoat.

The CI advocates aren’t any better, if not worse.

I have very pleasant relationships with many parents of implanted children and CI users. I, however, have also been called a failure because I still use [American Sign Language] and don’t speak perfectly. I’ve also seen a mother run across a room to prevent her child from signing to another deaf child. I’ve been scolded for making gestures and looking too “deaf.”

The debate, of course, is ongoing.

But for those of us not faced with opting for or against a cochlear implant, we are faced with the challenge of overcoming our bias and remembering that Deaf culture is no less valid than the hearing culture we inhabit. Especially when those admittedly tantalizing videos wind up in our Facebook feeds.

 

 

We Gotta Watch Our Language When It Comes to End of Life Debates

13 Sep

Jerzy body

(Image by Ekaterina used under CC license via)

 

On Friday the British Parliament resoundingly struck down a bill that would guarantee its citizens the right to physician-assisted death. Yesterday California’s legislature voted to make it the sixth state in the U.S. to legalize it.

Robust, nuanced arguments have been made for and against physician-assisted death for terminally ill patients, and none of these arguments could be successfully summarized within a single article. This is why a conclusive stance on the issue will never appear on this blog. It is nothing but moving to hear the deeply emotional pleas from those in the right-to-die movement who have thought long and hard about the prospect of death, who feel empowered by having some choice when facing down a daunting fate, who don’t want to find out which of their loved ones may turn out to be unskilled at care-giving. And it is equally moving to hear the experiences of those working in hospice and palliative care who face the approach of death every day with the determination to make it as minimally painful and emotionally validating as possible for all involved.

However, despite the emotional validity of both sides, there are tactics the right-to-die movement should avoid if it does not wish to make our culture more ableist than it already is. Openness about end of life decisions can shed light on a subject previously cloistered away, but the more the right-to-die movement celebrates the idea of ending someone’s life before it transforms into a certain condition, the less willing the public may be to engage with and invest in those who live in that condition.

Which is why no one should call physician-assisted death “Death with Dignity,” as lawmakers in Washington, Oregon, and New York have done. The implication that anyone who opts out of assisted death might live an undignified life is reckless and arrogant. A patient declaring the prospect of invasive life-saving interventions “too much” is fair. A writer declaring the quality of life of those who opt for them “pathetic” is ostracizing. It insults not only those enduring late-life debilitation, but the everyday conditions of many, many disabled people of all ages around the world.

Even today, when so many movements push to integrate disabled people into the mainstream, the average person is generally isolated from the reality of severe deformity, high dependence, and chronic pain. This isolation feeds fear and is therein self-perpetuating. As opponents have pointed out, many right-to-die arguments quickly snowball, equating terminal illness with chronic illness and disability, and portraying all three as a fate worse than death. Hence the name of the New York-based disability rights group Not Dead Yet.

Vermont’s recent law, the Patient Choice and Control Act, bears a far less polemic name than the others currently on the books. That’s a start. Experts are divided as to whether the current openness about end of life decisions in the U.S. has led to more terminally ill Americans considering and opting for hospice and palliative care. Regardless, both sides should be encouraging well-informed discussions that honor a patient’s right to voice his beliefs based on personal experience, and a disabled person’s right to not be further marginalized by a culture that has historically feared her existence.

 

*Note: I use “physician-assisted death” and other terms in deference to World Suicide Prevention Day this past Thursday and the media guidelines from the Center for Disease Control, which discourage use of the word “suicide” in headlines to avoid contagion.

 

Happy Birthday, ADA!

26 Jul

 

This week marks the 25-year anniversary of the passing of the Americans with Disabilities Act. As others have noted, the law was ground-breaking not only because of its international ripple effect, but because it recognized disability not as an issue of health, but of human rights.

Author of the bill, Robert L. Burgdorf, Jr. writes in The Washington Post why this was so necessary:

People with disabilities were routinely denied rights that most members of our society take for granted, including the right to vote (sometimes by state law, other times by inaccessible polling places), to obtain a driver’s license, to enter the courts and to hold public office. Many states had laws prohibiting marriage by, and permitting or requiring involuntary sterilization of, persons with various mental or physical conditions, particularly intellectual disability, mental health conditions and epilepsy. A number of states restricted or denied the right of people with mental disabilities to enter into contracts. Several U.S. cities, including Chicago, Columbus and Omaha, had what became known as “ugly laws” that banned from streets and public places people whose physical condition or appearance rendered them unpleasant for other people to see. These laws were actually enforced as recently as 1974, when a police officer arrested a man for violating Omaha’s ordinance.

In some instances, discrimination threatened the very lives of individuals with disabilities: Lifesaving medical treatments that would routinely have been made available to other patients were denied to patients with disabilities; in 1974, the New York Times cited an estimate that unnecessary deaths of babies with disabilities in the U.S. resulting from withholding of medical treatment numbered in the thousands each year.

Things have improved substantially, which is cause for celebration. But not complacency. Which is why NPR’s article “Why Disability and Poverty Still Go Hand-In-Hand” is well worth your time, as is the above TED Talk by the late, great Stella Young, whose unexpected death last winter was a tremendous loss to the disability rights movement and to anyone who enjoys a good dose of sarcasm with their social critique.

 

 

Difference Diaries Wants to Hear from You

19 Jul

Copyright Difference Diaries

 

I have recently become the Director of Educational and Multimedia Outreach at the Difference Diaries, and today marks the launch of the Difference Diaries Blog. We want submissions and we want them now.

The Need. This week Freeburg High School in Illinois jubilantly voted down a petition by Little People of America to retire their school mascot, the Freeburg Midgets.

Such incidents are hardly isolated. Dwarfs rarely make the news, and when we do, we often wish we didn’t. Two summers ago Slate magazine, one of my favorite socio-political periodicals geared at young adults, kicked off a blog about Florida with an opening article called, “True Facts About the Weirdest, Wildest, Most Fascinating State.” Among the facts that apparently render the Sunshine State weird are the python-fighting alligators and “a town founded by a troupe of Russian circus midgets whose bus broke down.” On the day of its release, Slate ran the article as its headline and emblazoned “A Town Founded By Russian Circus Midgets” across its front page as a teaser.

Face-palm.

Here’s the thing about dealing with all this. You get used to it, but not forever and always. Sometimes it rolls off your back, sometimes it hits a nerve. This time, seeing a magazine as progressive as Slate brandish RUSSIAN CIRCUS MIDGETS on its front page while leaving disability rights out of its social justice discussion brought me right back to college, where friends of friends called me “Dwarf Emily” behind my back and someone else defended them to my face. Where classmates cackled about the film Even Dwarfs Started Off Small—“because it’s just so awesome to see the midgets going all ape-shit!”—but declined my offer to screen the documentary Dwarfs: Not A Fairy Tale. Where a professor was utterly outraged that her students didn’t seem to care about immigration rights or trans rights, but she never once mentioned disability rights. Where an acquaintance asked to borrow my copy of The Curious Lives of Human Cadavers, but awkwardly turned down my offer to lend her Surgically Shaping Children. Where roommates argued vociferously that they would rather be euthanized than lose the ability to walk. Where jokes about dwarf-tossing were printed in the student newspaper.

I won’t go into certain crude comments that involved me personally, but I will say that when a friend recently, carefully tried to tell me about how shocked he was to find a certain video of dwarfs in a grocery store, I cut him off and said, “Lemme guess, it was a dwarf woman porn video? That’s one of the top search terms that bring people to my blog.”

This is not to ignore all those I’ve met who, despite their lack of experience with disability, ask carefully constructed questions and consistently make me feel not like a curious object but like a friend who is free to speak her mind about any part of her life experience. And some young adults are doing awesome work for disability rights and awareness. But when a journalist and mother of a disabled twentysomething recently said to me, “No one wants to talk about disability rights – it’s not seen as sexy enough,” I knew exactly what she was talking about.

Maybe this is just a matter of my growing up, leaving the cocoon of childhood and finding out how uncaring the world can sometimes be. But ableism among young adults in the form of silence and/or sick fascination is a lot more prevalent than many would like to admit. And why does it have to be? Are physical differences truly not sexy enough? Is it because we associate disabilities, diseases and related issues—like caregiving—with older people and with dependence? Dependence is usually the last thing to be considered cool. But does it have to be?

The Means. As a non-profit organization, Difference Diaries aims to ignite ongoing conversation that will contribute to better lives for those living with defining difference as well as friends, families, and perfect strangers who “just never thought about it.” The young adults who share their stories offer real insights and an opportunity for viewers and readers to know a little more about “what it’s like.”

We focus on conditions as diverse as the individuals living with them including: cancer, hemophilia, dwarfism, sickle-cell anemia, albinism, facial deformity, blindness, HIV, amputee, hemangioma, vitiligo, diabetes, renal disease, Crohn’s disease, cystic fibrosis, cerebral palsy, OCD and more.

This is why we want to hear from you. We are seeking blog submissions about living with Difference as a young adult. Prospective bloggers should consider: What does Difference mean to you? What is your personal experience of being Different? What has to be explained most often at work, school, out in public? What would be the most helpful thing for people to know about your Difference? How would you like to see society improve in how it handles Difference?

Send us your submissions via e-mail to info[at]differencediaries.org

 

 

Mother Petitions to End Germany’s Nationwide Youth Games

5 Jul

BXP135660(Image by Tableatny used under CC license via)
The Nationwide Youth Games (Bundesjugendspiele) are a 95-year-old annual tradition here in Germany wherein students ages 6 to 16 spend a day competing against each other in track and field, swimming, and gymnastics. The total scores are read off in a ceremony before the entire school, and those who accumulate a certain number of points are awarded either a “certificate of victory” or a “certificate of honor.” Since 1991, “certificates of participation” have been handed out to the rest of the students.

After her son came home sobbing at having received a mere certificate of participation two weeks ago, journalist Christine Finke started an online petition to put an end to the Games. She explains on her blog:

I’m doing this for all the children who feel sick to their stomach the night before the Nationwide Youth Games, for those who wish they could disappear into the ground during the Games, and for those who want to burst into tears during the awards ceremony… Sports should be fun and make you feel good about your body. But the Nationwide Youth Games are founded on grading: on the upgrading and degrading of some at the expense of others.

She dismisses the Games as a relic of the Nazi era, and while the original Reich Games preceded Hitler, founder Carl Diem did go on to be active member of the regime who instrumentalized the Games as propaganda for the Nazi obsession with bodily perfection. Finke points to the Nazi-like language of her critics on Twitter: “Our children shouldn’t be allowed to turn into sissies.”  Indeed, mottos such as Only the strong survive commonly found in sports culture in the U.S. and other countries are not taken lightly here in Germany, where sick and disabled citizens were murdered in mass numbers less than a century ago. 

As a semi-disabled kid, I had plenty of physical limitations, but, like most kids, I enjoyed the sports that I could play fairly well (baseball, tennis, jump rope) and I quickly got bored with those that put me at the bottom of the class (basketball, football, soccer).  Due to the vulnerability of the narrow achondroplastic spinal column, I wasn’t ever allowed to participate in gymnastics, and contact sports were forbidden after the age of 10 when my peers began to tower over me.  I countered the feelings of exclusion with feelings of pride for holding the pool record for staying underwater (1 minute 15 seconds), and for surpassing everyone in the joint flexibility tests. But what about the kids whose bodies ensure that they will never surpass anyone else in any competition? The best advice I ever got came from my primary school physical education teacher: “If you had fun, you won.” 

But then came adolescence, and with the onset of puberty, the body suddenly is no longer merely something that gets you from place to place. It becomes an object you are expected to sell to others in the brutal competition of dating and mating. It’s no wonder that an almost debilitating self-consciousness encompasses so many, whether in the form of sitting out of sports, refusing to ever dance or, in extreme cases, developing disordered eating habits.

I asked adult German friends how they felt about the Games. “It is the most humiliating memory I have from school!” one responded.

“It’s more likely to teach people to stay far, far away from sports for the rest of their lives, rather than inspire them to be more physically active,” argued one mother.

“Ach, it wasn’t humiliating,” insisted one man. “It was boring. It was all about skipping out to go smoke cigarettes while the super-athletes had their fun.”

“Exactly!” chimed another. “No one cared about it except the ones who won everything.”

I spent my high school years as the scorekeeper for the girls’ volleyball team at the urging of one of the two coaches, whom I both admired greatly. Throughout three years of volleyball games, I witnessed edifying examples of cooperation and self-confidence, and I witnessed a lot of childishness and borderline cruelty from overemotional adults as well as teens.

From that time on, I’ve generally viewed competitive sports the same way most people view rodeos or yodeling clubs – i.e., good for you if you derive joy from that sort of thing, but the competitions and the medals say nothing to me about whether or not you’re a lovely person. 

Of course athletic achievement can signify important life skills like self-discipline and team work, as a recent Michigan State University study has found. But sports are not necessary for developing those skills. Self-discipline can also be demonstrated by reading two books a week or vowing to learn a foreign language and actually doing it.  Tolerance, self-confidence and decisiveness has been shown to increase among students who study abroad.  Team work can be learned from playing in a band.  Or, as LeVar Burton taught us on Reading Rainbow, an aerobics-inspired dance troupe. 

In arguing to keep the Games, physical education teacher Günter Stibbe says, “Sports are brutal, of course.  But students have to learn how to deal with humiliation.”

Indeed, narcissism is characterized not just by excessive bragging but also by reacting badly to criticism or failure.  Performing poorly in sports—or in any field—can be an opportunity to learn to accept all the moments in life when you won’t be seen as special. But the idea that the body is only worth what it can do is deleterious. And too many educators fail to teach students the dangers of being too competitive and fearing weakness

The heavier burden may in fact fall on those who come out on top in high school and risk later panicking when they learn that the big wide world doesn’t really care about how many points they accrued in the discus throw back when they were 16.  Both the losers and the winners would benefit from learning that athletic competitions in youth are no more important than rodeos or yodeling competitions at any time in your life.  After all, points and medals are no indication of whether or not you’ll know how to pursue healthy relationships, be a responsible member of your family and community, or find a fulfilling career. Those who heavily brag on into adulthood about how hard they just worked out down at the gym—or how many books they read, or how much they earn—usually appear to be compensating.

This is perhaps why Stibbe criticizes the tradition of reading of the scores in front of the whole school as “pedagogically irresponsible.”

But in Der Spiegel’s online survey, there is no option for arguing for the Games on the grounds of sportsmanship and accepting one’s limitations. The two arguments to click on to support the tradition are “For God’s sake! It was the only thing I was ever good at in school!” and “What else would we do with our crumbling race tracks?” The majority of the 57,000+ respondents chose the latter.

 

 

And the Name of the Drug That Might End Dwarfism Is Vosoritide

28 Jun

Medicine 3(Image by Marosh used under CC license via)

 

Pharmaceuticals company BioMarin announced last week the first results of their clinical trials for the drug BMN-111, now named vosoritide by the World Health Organization. Researchers have been developing vosoritide in hopes of one day curing achondroplasia, the most common type of dwarfism. Vice-President Dr. Wolfgang Dummer reported:

In children receiving the highest dose of 15 micrograms per kilogram daily, we observed a 50% increase in mean annualized growth velocity compared to their own natural history control growth velocity. This increase in growth velocity, if maintained, could allow children with achondroplasia to resume a normalized growth rate. More importantly, vosoritide was well tolerated in all dose cohorts and we have observed no major safety concerns to date.

Whether or not vosoritide could reduce an achondroplastic person’s increased risk for chronic joint pain, bowed legs, spinal stenosis, sleep apnea, or hydrocephalus remains to be seen.

Since many of my readers are new to the blog, I’m re-posting my article “Will We Live to See the End of Dwarfism?” about how some of us with achondroplasia feel about all of this.

* * *

Medicine has been transforming the fate of human society since the first moment someone bandaged a wound. Bearing this in mind, along with the more recent advances in genetics, I have realized for the past decade or so that there is a future, however near or distant, that promises a world without dwarfism. But what if this world arrives as soon as the next generation?

Pharmaceuticals company BioMarin reported earlier this year the start of clinical trials for a drug called BMN-111. If it ends up doing what it promises, repeated injections could transform the bone and cartilage growth of children born with achondroplasia, essentially curing them of the condition. Could this mean that I might someday belong to the last of the dwarfs?

To be clear, BMN-111 could cure only achondroplasia, the most common type of dwarfism, not the other 200+ types. (So the attention-grabbing name of this article is a tad misleading.) Dwarfism caused by growth hormone deficiency—which affected circus performer General Tom Thumb and most of the actors playing the Munchkins in The Wizard of Oz—has already been cured by hormone injections invented at the end of the last century. But 70% of all dwarfs have achondroplasia. Without us, the small number of people identifiable as dwarfs would become much smaller.

Because I’m a fully grown adult, I can’t ever cure my achondroplasia. But would I have chosen to do so if I could? Were my doctor to offer me a pill that would transform my joints and my muscle tone, allowing me to walk and stand around for longer than an hour without my feet swelling with pain, I would take it in an instant. The same goes for a pill that would endow me with more normal fine motor strength, so that I could open jars and push down sticky buttons and do all those tasks that leave me swearing and/or asking someone else for help. I would gladly have taken a pill that would broaden my Eustachian tubes so that I would stop getting ear infections every year. And I would have embraced any sort of medicine that would have widened my spinal column so that I would never have had to have a laminectomy, and so that I could cook and clean my house without back pain. All of the discomfort and inconvenience I just listed are part and parcel of achondroplasia – parts that limb-lengthening could never alter.  

But when I consider a pill that, in ridding me of all that pain, would also rid me of every physical marker of achondroplasia, I suddenly hesitate. My wrists, my feet, my skull, my face would look significantly different from the one I have. The idea of never having had to learn how best to react to being the most physically remarkable person in school, of never having undergone limb-lengthening, of never having lived in an institution with children with all sorts of serious conditions, of never having had to explain my unique history to others – it makes me have a hard time imagining an Emily Sullivan Sanford that is anything like the one I know today. My dwarfism is only part of who I am, but it has been a significant part of who I am. This is why I understand the Little People of America members who balk at BMN-111, put their fingers in their ears and chant, “Go away, go away, go away!”

We must approach the future rationally because our emotional attachment to life as we know it can lead us to delude ourselves with an unrealistic sense of control. History after all demonstrates that future generations will never know all kinds of things we treasure today. Give or take a few centuries, people in our part of the world will most certainly not face the same illnesses, speak the same language, wear the same clothes, eat the same foods, or observe the same traditions we do. Whether we’re debating the politics of Hawaiian Pidgin or that punk’s not dead, we do not get the final say on what future generations will know and what will be lost to the ages.

Identity is a construct, but a construct that is as powerful as any other. As Andrew Solomon writes, “I don’t wish for anyone in particular to be gay, but the idea of no one’s being gay makes me miss myself already.”

Granted achondroplasia is not merely a difference like a dialect or homosexuality. It is a medical condition that causes very real physical pain and health risks. Like diabetes. I can write with certainty that the vast majority of people with diabetes, while rightfully proud of the obstacles they’ve overcome, would happily rid themselves of the disease. They would celebrate never having to check their blood sugar, inject themselves with insulin, or worry about developing dangerous complications. We can safely make the same assumption for people who have to deal with migraine headaches or deep-vein thrombosis.

But let’s consider a condition that, like achondroplasia, has as many social ramifications as medical ones. I bet most people who wear glasses would gladly take a pill that guaranteed perfect vision. No more headaches, no more pressure sores on the bridge of your nose, no more wondering where you set them down, no more worrying if they break, no more bills! But would they so easily let go of their bespectacled appearance? Although he no longer needs glasses since his laser surgery, comedian Drew Carey wears non-prescription glasses to maintain his look.

I surveyed a handful of friends in Europe and the U.S., and most answered that they would indeed take a pill guaranteed to improve their vision, and also that they would never wear anything but sunglasses again. If this scenario ever becomes reality, the movement of the past 100 years to broaden beauty standards to include the bespectacled will begin to fade. The 20% of my respondents that answered, “I would wear non-prescription glasses because it’s a part of my identity,” will belong to a shrinking minority left to fend for itself. They will likely start counting the minutes until they hear something marginalizing like: “Isn’t it great you won’t have to look like a nerd anymore?”    

Once again, people with achondroplasia must admit that our distinguishing condition involves far more innate physical complications than simply needing glasses or being gay. Activist Harry Wieder bemoaned the reticence among people with dwarfism to even admit that we are disabled, and he was right to be so critical. Downplaying the pain and surgical risks everyone with achondroplasia faces is a matter of denial. But such denial is often rooted in the worry that others will overemphasize our pain, distancing themselves from us in a way all too similar to the fear and pity that fuels ableism. Such distance imposed by other minorities can break solidarity and lead to hierarchical thinking along the lines of, “At least I’m not like that!

Anyone who reacts to the idea of BMN-111 ridding humanity of the achondroplastic appearance with a sigh of relief has a problem. It’s a problem we can never afford to ignore. The lessons of diversity awareness and inclusion are priceless. If dermatologists some day offer a cure for vitiligo, Winnie Harlow’s recent successes in the world of modeling will still have only been a good thing.

My attachment to my starfish hands, my achondroplastic nose, and my scars is not rational. But the human experience is never purely rational. And self-acceptance is an achievement like no other. Almost every person with achondroplasia has a jarring moment when they see themselves in photos or on film and are reminded that their hands are not at all slender, like most of the hands they see in photos or on film. Or that their hips sway when they walk. Or that their skulls are larger. Learning to live with the shock is a difficult but worthwhile experience. When a mother of a girl with achondroplasia wrote to me, asking about her four-year-old daughter’s future, my family awwwwwed at the photos she sent us. “I remember having an adorable little girl with a forehead like that!” my dad grinned.

I was not nearly so moved by the recently published images of celebrities photoshopped to “reimagine them with dwarfism” next to an image of Peter Dinklage photoshopped to “reimagine him without” because only their legs were modified.

The project itself is thought-provoking, but Daniel Radcliffe simply wouldn’t get into the achondroplasia club with those ridiculously long arms. And Peter Dinklage—whom GQ declared a “stud” in its 2011 Men of the Year list—would have a dramatically different forehead, cheekbones, jaw, and nose.

One of the respondents to my survey who said he would keep his glasses explained, “Not really for aesthetic reasons, exactly, though that’s part of it (and it is fun to buy glasses). But because they’re a part of my face! I’ve never considered contacts, either, come to think of it. They serve some other function, beyond utility and style, I guess.”

Similar feelings have been expressed by people who underwent surgery to remove the sixth finger on their right hand for convenience, while opting against the removal of the sixth finger on their left: “Why would I cut it off? It’s a part of me.”

Syndactyly runs in two sides of my family. One relative remarked about her child, “I was so happy when she was born to see she didn’t have those fused toes!”

To which another relative with fused toes later said, “Why? It hurts a bit more when you stub them, but otherwise, what’s the big deal?”

Replace the word “fused toes” with red hair or monolids or pale skin or dark skin or freckles or whatever intrinsic part of you might somewhere be considered unfashionable and you’ll know a little how dwarfs feel about BMN-111. As with limb-lengthening, BMN-111 threatens to out the uglier feelings some people have about our appearance. We must remember that it’s the feelings that are ugly, not the body.    

Talking out my endlessly complex thoughts about a world without dwarfism feels like moving through a labyrinth that is partly my own making. During one such recent talk, a close friend said to me, “If we could look at a version of you that never had achondroplasia, I understand that you would miss yourself and I would miss you, too.  But you would be awesome in a different way that would still be your own way, and it would be without all the pain and complications and danger.”

This is what people with achondroplasia need to hear from those who truly accept them.

 

 

What Makes A Story “Depressing”?

24 May

I recently read Good Kings Bad Kings by Susan Nussbaum, winner of the PEN Bellwether Prize for Socially Engaged Fiction and several other accolades. When describing it to friends as a story told from the perspectives of patients and staff at an institution for severely disabled minors, I got a common response: “Well, that sounds like a fun read!”

I will perhaps never fully grasp what distinguishes a depressing story that brings you down from a great drama that hooks you from the start. The bestselling books in the English language are about a boy who must face down his parents’ killer, a girl who spends hours in her lover’s Red Room of Pain, and a high schooler who can’t wait to have a monster baby with an emotionally disturbed vampire. Crime shows and novels continue to be wildly popular through the generations. If you turned on the closed captioning for most of the top-grossing films of the last 30 years, you would be reading, “[scary music],” every few minutes.

Why do we embrace all this while believing that a book that starts off with the rants of a teen in a wheelchair might be too heavy to handle?

Of course, realistic portrayals of suffering pack a far more visceral punch than contrived ones. Pirates of the Caribbean and Star Wars will widely be perceived as less distressing than The Piano and Love Is Strange because, despite their carnage, the adventure stories never get inside their victims’ heads. Touchy-feely tales embraced by mass audiences tend to have happy endings, or at least the satisfying downfall of an easily identifiable villain. This is why, as Salon’s book critic Laura Miller has pointed out, a story is schlocky and sentimental insofar as it lies to the audience.

And Good Kings Bad Kings does not lie to its audience. I embarrassingly ended up having to conceal tears streaming down my cheeks while sitting on a bus as I read about one particularly beguiling character who (SPOILER ALERT) dies after getting third-degree burns in the shower due to human error and then catching pneumonia after surgery. I can attest that such a tragic scene is representative of reality, not sheer melodrama. I lived in a pediatric hospital for five months when I was a pre-teen, and the next year I learned that one of my friends had died after his breathing apparatus failed due to human error, and another one had died from catching pneumonia after surgery.

Living at that hospital was far from easy. As I’ve written before, listening to others share their realities in group therapy was one of the most humbling experiences I’ve ever had. But while the human fear of death and suffering is rational and something I never lost, living alongside the patients did knock down many of my fears of illness and disability that were irrational.

Within a few weeks on the ward, I was no longer disconcerted at the sight of head injuries, tracheostomy tubes, stumps, or burned faces. At first I stared. Many of the owners stared back at me and my Ilizarov fixators. We all stared at anyone with a condition we hadn’t seen before. And sometimes we stared at each other’s wheelchairs out of envy. But the constant exposure soon rendered such features as mundane to us as glasses, braces, and freckles. We were used to it. What is the harm in allowing the rest of the world to get used to it, both through inclusion in society and representation in books and film?

As a study published in Science found, reading literary fiction makes you more emotionally intelligent. As The New York Times reported, “This was true even though, when asked, subjects said they did not enjoy literary fiction as much. Literary fiction readers also scored better than nonfiction readers — and popular fiction readers made as many mistakes as people who read nothing.” The results are unsurprising when literary fiction distinguishes itself from popular fiction by avoiding formulas and stereotypes. We’ve already seen that avoiding stereotypes fosters more creative, innovative thinking. Now it makes us better at understanding each other, too.

Indeed, literature provides characters who are realistic because they are just as complex as we all are. Realistic characters don’t make us the readers like them. They make us understand them, while simultaneously being a little bothered by them because we recognize their faults and selfish impulses in ourselves. In other words, a great literary feat doesn’t show you good people triumphing over the bad. It shows you how and why we hurt each other.

The harm in Good Kings Bad Kings is not wrought by cackling villains upon innocent angels. It comes from the fear, anger, and selfishness easily recognizable in everyday life. And it is visited upon disabled people who are not dying to escape their diagnoses but who are sick of the condition our society has left them in. As Susan Nussbaum writes in her afterword:

I used to wonder where all the writers who have used disabled characters so liberally in their work were doing their research. When I became a wheelchair-user in the late seventies, all I knew about being disabled I learned from reading books and watching movies, and that scared the shit out of me. Tiny Tim was long-suffering and angelic and was cured in the end. Quasimodo was a monster who loved in vain and was killed in the end, but it was for the best. Lenny [in Of Mice and Men] was a child who killed anything soft, and George had to shoot him. It was a mercy killing. Ahab [in Moby Dick] was a bitter amputee and didn’t care how many died in his mad pursuit to avenge himself on a whale. Laura Wingfield [in The Glass Menagerie] had a limp, so no man would ever love her…

None of the characters I write about are particularly courageous or angelic or suicidal, bitter for their fate, ashamed to be alive, apt to kill anyone because they have an intellectual or psychiatric disability, or dreaming of being cured or even vaguely concerned with being cured.

And that’s what makes realistic portrayals of disabled people so significant. Not for the sake of inspiration porn. Not to make us proud of how good we have it. But to welcome disabled people’s lives, stories, and perspectives into the arts and therein mainstream society.

The assumption that a story about severely disabled characters must be overwhelmingly upsetting is precisely the mentality that marginalizes severely disabled people. If we won’t read their stories because they’re too sad, we’re not very likely to know how to approach them in real life.

And for all its lines about the importance of realistic stories for the sake of galvanizing greater empathy, The New York Times never reviewed Nussbaum’s award-winning book.

 

 

When It Comes To Health, Who Should Minorities Trust?

12 Apr

Medication diet squircle(Image by Barry used under CC.20 via)

 

At the beginning of this year, I underwent orthopedic surgery and rare complications immediately arose from it, causing me to take three months of sick leave. In that time, both my country of origin and my country of residence experienced outbreaks of measles that have set the Internet ablaze with raging arguments about medicine, personal choice and the greater good. While the critics of Big Pharma have plenty of good points, recent studies of Big Herba—which is unregulated in the U.S.—have debunked an array of flaws that can be deadly. Glossing over the vitriol, at the crux of the matter lies a very reasonable question: When it comes to health, who should you trust?

“Trust to your doctor” sounds simple enough until we consider the many instances throughout history when medical professionals have abused this trust, particularly in regard to minorities. Health organizations around the world classified gay people as mentally ill as late as 2001. A panelist on Larry Wilmore’s The Nightly Show last month cited the Tuskegee syphilis experiment, which treated African-American men like lab rates from 1932 to 1972, as the basis for his overarching distrust of government health organizations. Investigations recently revealed that the U.S. Public Health Service committed similar crimes against mental patients and inmates in Guatemala in the 1940s. The polio vaccine, which has saved millions of lives globally, was first tested on physically and mentally disabled children living in asylums and orphanages. Researchers advocated the forced sterilization of trans people and ethnic minorities as recently as 2012. And of course there were the Nazis and the many, many scientists before them who passionately promoted eugenics. ITV recently rebroadcast a documentary hosted by Warwick Davis detailing Dr. Mengele’s horrific experiments on dwarfs at Auschwitz.

In other words, minorities don’t have to dig too deep to come up with plenty of reasons to be wary of scientists and doctors. Regulation, transparency and a never-ending, highly public debate on bio-ethics and human rights are necessary to prevent such crimes from happening again.

But an ideological opposition to all doctors based on such abuses ignores the myriad successes. A Slate article appearing last fall, “Why Are You Not Dead Yet?” catalogs the thousands of reasons so many of us are living so much longer than our ancestors did—from appendectomies to EpiPens to everyday medications—which we so often overlook because we have come to take the enormous medical advances of the past 200 years for granted.

And yet, as so many scientists are only too ready to admit, science does not know everything. Almost no medical procedure can be guaranteed to be risk-free, and many people base their distrust of doctors on this fact. My current post-surgical complications were just cited to me by an acquaintance as reason enough for why I never should have had the operation at all and instead gone to a TCM healer.  

In my 33 years I have undergone 14 surgeries, physical therapy, hydrotherapy, occupational therapy, electro-muscular stimulation therapy, and the list of medications I’ve taken undoubtedly exceeds a hundred. I have also been treated with reiki, shiatsu, osteopathy, acupuncture, massage, prayer, and herbal remedies based on macrobiotic, homeopathic and detox theories. Some of these treatments I chose as an adult, and some of them were chosen for me by adults when I was a child and a teen. Some of the medical treatments worked, some didn’t, and some caused new problems. Some of the alternative treatments rid me of lingering pain, and some were a complete waste of time, money and energy as my condition worsened. I won’t ever advocate any specific treatment on this blog because my readership is undoubtedly diverse and the risk of making inaccurate generalizations is too great.

Indeed, a grave problem in the public debate on health is the frequent failure to acknowledge human diversity. Most health advice found online, in the media, at the gym or a healing center is geared not at minorities but physiotypical people, who are seeking the best way to lower their risk for heart disease, fit into their old jeans, to train for a marathon, or to simply feel better. They are not seeking the best way to be able to walk to the corner or have enough strength to shop for more than half an hour. Those in the health industry who endorse one-size-fits-all solutions—“We just need to jog/Start tai-chi/Eat beans, and all our troubles will go away!”—rarely address minority cases that prove to be the exception to their rule. But atypical bodies have just as much to teach us about our health as typical bodies, and leaving them out of the conversation benefits no one but those seeking to profit off easy answers.

When it comes to seeking treatment for my condition, I follow a simple rubric: I don’t want to be the smartest person in the room. I have no professional training in medicine or anatomy. As this physician explains so well, self-diagnosis is a very dangerous game. Yet I sometimes am the expert on my body thanks to the relative scarcity of people with achondroplasia—there are only 250,000 of us on earth, or 0.00004% of the world population—compounded with the scarcity of people with achondroplasia who have undergone limb-lengthening and sustained bilateral injuries to the anterior tibialis tendons. A visit to a healing center or a hospital often entails conversations like these:

Shiatsu Healer: You’re walking with a sway-back. Your wood energy is obviously misaligned because you are stressed.

Me: My hips sway when I walk because the ball-and-socket joint in the hip is shaped instead like an egg-and-socket in people with achondroplasia.

***

Physical Therapist: Your hips sway when you walk because one leg is obviously longer than the other.

Me: No, I have my orthopedist’s report documenting that my legs are precisely the same length. My hips sway when I walk because the ball-and-socket joint in the hip is shaped instead like an egg-and-socket in people with achondroplasia.

 ***

Nurse: Your temperature is pretty high. I’m a bit worried.

Me: These anesthesiology guidelines I got from the Federal Association for Short-Statured People say that hyperthermia is to be expected post-op in patients with achondroplasia.

Sometimes the information I offer goes unheeded. In both the U.S. and in Germany, I have found arrogance is equally common among doctors and healers. Some of them are delightfully approachable, and others are so socially off-putting that they make you want to throw your wheelchair at them. The same arrogance, however, can take different forms. I have documented before the particular brand of pomposity so endemic to doctors, and it is safe to say that holistic healers are less likely to treat their patients like products on an assembly line because, by definition, they are more likely to take psychological well-being into account. But they are also more likely to endorse a one-size-fits-all solution for health, which invariably marginalizes minorities like me.

Those of us with extremely rare conditions are far more likely to find specialists among those licensed in medicine than among alternative healers. Living Naturally, the only website on alternative treatments I could find that even mentions achondroplasia, emphasizes that none of the therapies they suggest for achondroplasia have ever been tested on patients who have it. To be fair, rare conditions by definition are not well-known to your average GP either. But physicians more often know how to work with the facts, embracing the medical literature on achondroplasia I hand to them. Some alternative healers also embrace such literature, while others dismiss anything written by anyone in a white coat.

Even when a visceral hatred of hospitals and their hosts is irrational, it is understandable. My most recent stay involved some of the kindest medical professionals I have ever encountered but nevertheless left me waiting for two and a half hours on a metal bench with no back support in a hallway glaring with fluorescent lights and echoing with the cries of patients in pain. I respect everyone’s right to opt against surgery, or any medical treatment, as long as their condition does not cause others harm. But no matter how much modern medicine has abused minorities’ trust, disabled people are the only minority that cannot afford to forgo it.

A worldwide study presented to Little People of America found that, at this point in history, dwarfs have a higher quality of life—i.e., access to effective health care, employment opportunities, acceptance in society—in Northern Europe than anywhere else on earth. Reductive arguments that demonize all of Western medicine because the Nazis! can be canceled out by reductive arguments that dismiss anything developed outside the West because Asia’s terrible disabled rights record!  

Broad generalizations like “Natural is better” can only be upheld by those ensconced in the privileges of a non-disabled body. In 2011, the parenting website Offbeat Families banned the term “natural birth”—urging writers to instead refer to “medicated” and “unmedicated” birth—because “natural” had so often been used to imply “healthier.” An unmedicated birth is wonderful for anyone who can and wants to experience it, but it is important to remember that it is a privilege. A privilege, like a disability, is neither your fault nor your achievement.      

“Healthy” is a relative idea. Our choices about our bodies will always be limited. This is a sometimes terrifying fact to face. But in the public debate, we must remember that it is a fact those among us with rare disabilities and conditions can never avoid. In failing to remember it, we fail to make decisions about human health that are truly informed.